UPDATE
I have been able to obtain the Lorlatinib through the NHS co-pay scheme at a cost of £3,400 per month which is a huge difference to the original £8,000 we were initially told. Since October, when I first took Lorlatinib, I have had no further growth in my brain. I'd really like to keep being able to say that. We were able to work quickly to transfer my care and thus avoided paying £8,000 more than once before £3,400 was agreed. However, long term this amount is still not sustainable and I would be enormously grateful for your ongoing support, whatever amount.
I was diagnosed with Stage IV lung cancer in August 2016. I had no symptoms, didn’t feel ill, in fact I was feeling better than I had for a long time. All I had was a swollen gland on my neck which I assumed was an infection.
Within two weeks I was a regular visitor to the chemo suite. Unfortunately chemo had no effect on my cancer and I began immunotherapy. In January 2017, after only one infusion of immunotherapy, I developed colitis which meant I had to stop immediately. Fortunately my cancer responded very well to the immunotherapy and I was able to have no treatment for a few months.
In May 2017, following another biopsy, I found I had a genetic mutation (ROS1). These mutations are generally found in younger, non-smokers and can be treated with targeted therapy - generally tablets that you take every day which target the specific gene that causes the cancer. I was lucky enough to get onto a drug trial and for three years my cancer shrunk and was kept under control.
In August 2020 I lost all movement down the right side of my body and they found that the cancer had spread to my brain. I had gammaknife radiotherapy to zap my brain mets. Laying completely still for 3.5 hours inside the machine with your head bolted to a table, is not the highlight of my days. Gammaknife is targeted to a specific area of the brain making it very risky to target the same area a second time without losing brain function and I’m quite keen to avoid that. So further radiotherapy is not possible at the moment.
The only drug that is available is not approved by the NHS for funding for my particular genetic mutation. I have written to Pfizer and asked if they would fund it for me; they said no. Axa refused the funding as part of my private health insurance as it is an unlicensed medication. This drug is highly effective at getting into the brain; I have two friends here in the UK with the same ROS1 genetic mutation who have been taking this drug for some years with no further progression in their brain. In the US it is standard treatment with many fellow ROS1ders (yes, cheesy) taking it successfully for some years.